Monthly Archives: September 2011

Last episode left me wondering if I should wear my heart on my book sleeve and look into attending the Huntington’s Disease Association (HDA) Annual General Meeting in a few weeks time. It’s held in a hotel and has a very wide audience of people in the HD Community, many of whom stay at the hotel for at least one night. I’d make lots of new sales, contacts, and receive and give lots of support. However, I’ve decided it is too much too soon and probably safer for me to stay away.

I am in talks with the HDA to take some books as they have taken my previous version in the past and sold them on. In terms of even bigger events, the HD World Congress was held last week in Melbourne. The HDA took along copies of the book so maybe I might get more interest in that part of the planet? I did feel a twinge of guilt though…

It occurred to me that if the Heads of HD organisations in the poorer countries flicked through a copy, they would read in places people griping about lack of resources and care. I’m aware many of the countries where HD is prevalent that there isn’t even a fraction of the help and resource available to me at the time of need and to many Westerners. I must come across as a very ungrateful you know what! I can’t change the World though, I wish I could. I can only do a little bit from my own perspective.

I have given below links to the Conference videos Days 1 and 2. I was very pleased that many of the organisations they are trying to promote have been mentioned in my book so I must be doing something right! There is a lot of hope out there on the HD front but still a long, long way to go.

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Huntington's Disease Association
The Huntington’s Disease Association is a great source of information on Huntington’s and also provides support through its Message Board feature where other carers and sufferers come together to discuss living with HD